Family fortunes

Hours spent on appointments and phone calls: 4,942. Number of different agencies involved in Celia’s care: over 20. Actual contacts with agencies: 774. Miles driven to appointments: 11,004.

These figures were compiled by Emma Parr to show the impact that her seven-year-old daughter’s severe disability and its management have had on their family life.

The government’s ambitions, as stated in the national service framework for children, young people and maternity services, are that disabled children should receive co-ordinated, high-quality child and family-centred services, based on assessed needs, which where possible, enable them and their families to live ordinary lives.

Clearly for much of Celia’s life, such joined-up, tailored services have not been in place. Her mother describes the frustration of attending the same hospital twice in the same week because clinics are held on different days, of appointments that disrupt schooling, and of “me acting as my daughter’s key worker and not her mum”.

And all of these difficulties must be dealt with while parents are trying to come to terms with the implications of the diagnosis. Christine Lenehan, director of the Council of Disabled Children, says providing support for parents in the initial stages after diagnosis is vital. “It’s the emotional things that are the most important. If you take a common severe disability like cerebral palsy, at the diagnosis the parents will hear those words and then nothing else after. It can take a long time to process. The earliest stages are the most sensitive.”

Contact a Family, a charity dedicated to providing support to families in this position, explains that this period can be even more worrying for those whose child has a rare disorder. It may be the first time their GP has come across that particular condition (meaning parents may have to “tell their story” many times down the line to other professionals also unaware of it). Some families may be told they are the only ones affected by the disorder. Others may rush to the internet, only to get unhelpful or inaccurate information.

Lenehan says that, ideally, families should get emotional support while they come to terms with the news, and should then have a single multi-agency assessment with a representative from all the different agencies that will be involved in their child’s care – for instance, physiotherapists, social services and educational psychologists.

From these, a key worker should be chosen to become the first point of contact, who will co-ordinate all angles of care, interpret jargon and ensure support.

After this, they need help with the practicalities of bringing up a child with a disability – advice on benefits, equipment and home adaptations, and information about employment rights. Getting the best financial guidance is particularly important given that the annual costs of raising a disabled child are three times greater than those for a non-disabled child.

Such good practice should be more in evidence since the advent of the Early Support Programme (ESP). The government has provided £13m between 2002-2006 for the project, which works to improve the quality of services for disabled children under three and their families. ESP is now active in 45 areas across England and is tackling exactly those issues that Denise Jenkins and other parents have struggled with – a lack of co-ordination of multi-agency services, a lack of information, and above all, a lack of parental involvement in planning their child’s care.

“The old problem we used to hear about was an expectation that the parents must adapt to the needs of the service rather than the service adapting to the needs of the parents,” says ESP director, John Ford.

“Our biggest success has been actually involving parents in the design of the types of service they would like to see for their individual child. What it is that their particular family would find useful.”

According to Ford, initial reactions from parents and professionals have been very positive and the intention is that from April 2006 local authorities will receive increased funding to deliver the programme nationally.

“In areas where ESP is in process and being implemented it’s making a huge difference,” says Lenehan. “But can we get it to be embedded practice across the board? I think the jury’s still out on that one.”

Reality checkDenise Jenkins’ son James was born 12 weeks prematurely and spent the first nine and a half weeks of his life in hospital. Not long after this he was diagnosed with cerebral palsy. James is now nine and has a seven-year-old sister.

“I didn’t take in everything the paediatrician told us at the diagnosis but I do remember him saying he was very sorry but there was nothing more he could do for us and he mentioned Scope. He also said: ‘Well, he’ll never be a footballer.’ Some professionals are great, but they should think before they make casual remarks that can be upsetting.

Later there were assessments from physios, occupational therapists and the child development unit. There was advice on benefits – the expense has been a real financial strain. Raising money for equipment, going round charities, writing letters – it can feel like begging.

When James was five I returned to work and that was hard because services weren’t joined up, school transport was inflexible, and some colleagues were more understanding than others about my needing flexibility.

Parents should be offered counselling. All the focus is on the child, understandably, but sometimes you feel you’re going mad and you really need to talk to someone who’s there just for you. Emotional support is vital – there should be a dedicated service for that.

Respite care is important. It used to be that they could just look after the disabled child for a few hours without taking account of other children. Things have improved here, and most parents can now go out one night a fortnight which eases the strain on their relationship.

You go through a grieving period, it takes a long time to accept. And in some ways it gets harder, more stressful, but I wouldn’t change James for anything – he’s taught me so much.”

All names have been changed

Factfile‹ Every day over 75 children in the UK are born or diagnosed with a serious disability or rare syndrome and the vast majority of them are cared for at home.‹ Nearly half of children with a disability may never receive a formal diagnosis.‹ Around 55% of families of disabled children live in poverty. It costs three times more per year to raise a disabled child as a non-disabled child.‹ 250,000 children have statements of special educational need (3% of all pupils).‹ A survey of families with children with profound and multiple disabilities found that 60% of parents spent more than 10 hours per day on basic physical care; one third of these were providing 24-hour care.‹ Contact a Family has a free helpline offering support and advice, and can often put families in touch with each other. Call 0808 808 3555